Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)

Not the Perfect Mom

Have you ever felt like you just can't catch a break? Like every little thing goes wrong all day long and completely ruins your mood and your attitude? Today has been one of those days for me and it's not even lunch time. Unfortunately, I feel like I have had a lot of those days lately and it just plain sucks.

I want to enjoy my family and my children. I want to be the mom that does fun activities with her kids and keeps a (relatively) clean house and has a good dinner on the table for her family every night. Instead, I feel like the mom who is constantly yelling at her kids and trying to get away from them, almost never provides any fun activities that we can all do together and more often than not feeds her kids lunch meat and cut up fruits and vegetables for dinner while I sit and watch them eat. And don't even get me started on what a wreck the house is all the time. I am exhausted at the end of the day (who am I kidding, I'm exhausted by the middle of the day) and I just can't seem to be the person I want to be.

Today, we got up early to take Daddy to the airport because he had to go to Las Vegas for the week for work. I tried to think of things to do with the kids today to keep them busy so we wouldn't be driving each other crazy. Going anywhere is pretty much out of the question because Aaron doesn't like being confined in his stroller and if he's not in his stroller when we are in public, he will run off and make it impossible to do anything. If he is in his stroller, he screams and cries. So, I am left to think of activities we can do at home. I got him a new water table last week and he hasn't played with it yet, so I thought that would be fun and would probably entertain them for an hour or two.

When we got home from the airport, I filled the table up with water and let Aaron play. The first thing he did was try to climb onto the table like he was getting into the bathtub. It's not a pool, so that didn't work, but it didn't prevent him from trying it about 5 dozen times. When he wasn't trying to get into the table, he found the drain plug and promptly pulled it so all the water drained out. After refilling the table (a couple of times), both boys were playing and getting completely soaked (which is fine - that's kind of the point). But of course every few minutes someone would cry or complain about something. Then a bee showed up and ruined the whole activity since Jacob refused to go anywhere near the table after that. (The bee did not sting anyone, but Jacob was stung by a yellow jacket last year and has been terrified of all bees since then) So that was the end of that activity! It lasted all of about 30 minutes.

So we came inside and watched some Blue's Clues and Phineas and Ferb on Netflix. But the dog also decided to pee on the floor next to me and Aaron stuck his hands in it before I noticed it. Once I cleaned that up and washed Aaron's hands, I noticed he had made a mess with his snack all over the walls, so I had to get out the Mr. Clean Magic Eraser to clean that up and while I was trying to do that, Aaron found his water bottle, came up behind me and started dumping his water on my back. Of course this was hilarious (to him). So now, the dog is outside, the boys are in their rooms and I am trying to convince myself that I can make it through the rest of this day. It's not even noon yet.

So I need some help here. I have all sorts of friends who post on Facebook and on their blogs about how great their kids are and the fun things they do together and how they can't wait for summer vacation so they can spend more time together. How do you do it? (by the way, if that's you, I'm not trying to be mean, I really want to know!) How do you enjoy all that time together without losing your mind? How do you do all of these fun things together and cook dinner and have that perfect family? I have been trying but I can't seem to figure it out, so I need some tips. Are you really as perfect and pulled together as you make it look? People tell me all the time that they don't know how I do what I do and sometimes people even tell me I'm a great mom. I feel like I am trying but I am far from a great mom or at least far from the mom that I want to be.

I'm not writing this because I want a pity party (although I realize that is pretty much what it sounds like) and I am not overwhelmed or feeling depressed. I'm just frustrated with the way things are and I want to make it better but I don't know how. So really, if you have any suggestions or tips on how you manage to get things done and actually enjoy your children, I would love to hear them.

FREEDOM!

I like talking about Aaron and his various diagnoses. Not because I like to think about all of his challenges, but because it gives me an opportunity to educate other people about all of these things that they may have never heard of. I have learned so much and done so much research in the past three and a half years and I really enjoy sharing that knowledge with other people. After all, it's the best way to spread awareness, right?

At this point, Aaron has so many diagnoses that it's hard to keep track of them all. I have several notebooks full of medical records and have to keep a file on the computer just so I can keep all of his doctors and therapists straight. At this point (keep in mind, he's only three), he has been diagnosed with Down Syndrome, Celiac Disease, Asthma, Sleep Apnea, a soy allergy, Sensory Processing Disorder, Reflux, Chronic Ear Infections (including three sets of tubes and an adenoid removal) and mild hearing loss. He also sees a cardiologist on a regular basis because he had a hole in his heart (VSD) when he was born. It closed on it's own within the first year of his life but we have continued to see cardiologists on at least a yearly basis for other more minor issues.

However, today we went to the cardiologist for our yearly visit and he said he has no more concerns about Aaron's heart!! Yay!!! He does want us to come back in 3-5 years for one more echocardiogram just to be sure nothing has changed but other than that we are cleared from Cardio!! This might not seem like a big deal to some, but Aaron has a Pediatrician, a Developmental Pediatrician (at the Down Syndrome Clinic in Atlanta), a Pulmonologist, an ENT, an Allergist, a GI doctor, an Orthopedist, an Ophthalmologist, a Pediatric Dentist and a Cardiologist that he sees at least once a year - most of them he sees more frequently than that. And that's not even counting the four therapists he sees every single week! So crossing even one of these specialists off the list is just so wonderful! Obviously I will (and do) take him to whatever appointments he needs but after all we have been through over the past three and a half years, it is amazing to hear a doctor tell me that he is cleared instead of telling me that he has a new, lifelong diagnosis.

Thank you God, for giving us a break today. It has felt like we have had nothing but a string of bad luck lately (and we are still currently trying to figure out his current medical problem, but more on that another time) but today I felt like we got a little relief. And it is oh so sweet. So today we rejoice in being one doctor down. Yippee!

Make New Friends But Keep the Old

Last night we had a visit from an old Air Force friend and his new wife as they drove (moved) from Alaska to Texas. We had a wonderful time visiting with Tony and Karen and it made me miss our ABM family terribly. We had such an amazing group of friends when we lived in Oklahoma and we haven't found anything like it since. That's not to say that we haven't found friends in other places, we have and they are wonderful, but this group is special and they will be a part of our lives forever. We have already been spread out all over the world but I hope that we will somehow, someday live close enough together to actually see each other more than once every 3 or 4 years.

I feel like my life gets so crazy that I often don't have time to stay connected to my friends but visiting with Tony and Karen last night reminded me just how important it is to make the effort. They remind me that life isn't as hard as it feels sometimes and that when it does become too much, my friends are there to support me, no matter how far away they live.

World Down Syndrome Day 2012

Today (3/21) is World Down Syndrome Day. It is celebrated today because of the symbolism of 3/21 - three copies of the 21st chromosome is what causes Down Syndrome.

Down Syndrome is something that is on my mind pretty much every day, but I realize for most people it is not. For that reason, I think days like today are so important. It's one more opportunity to share with the world that Down Syndrome is not a horrible disease and the people who have it don't need to be hidden away in institutions.

The best way that I know how to raise awareness is to share our story. So, even if you have heard it before, I hope you'll take the chance to read it again.

When I was pregnant with Aaron, I had no idea there was anything "wrong". I had all of the testing recommended by my OB (including what was then called the quad screen - which gives you "odds" that your baby will have a genetic abnormality) and everything came back normal. We had several ultrasounds which never showed anything unusual. I have always been a big advocate of having as much information as I can so I will be as prepared as possible. I would never have chosen to terminate my pregnancy if we had known beforehand, I just wanted to know, so I would have time to prepare. But, apparently that wasn't part of God's plan for us.

As it turns out, no one knew that Aaron had Down Syndrome when he was born. My blood pressure went up when I was about 38 weeks and my doctor decided it was best to induce me. I went to the hospital the night before the induction and ended up going into labor before they could start. Labor progressed quickly - so quickly that Matt only made it to the hospital about 20 minutes before Aaron was born and our doctor didn't make it at all. I also didn't have time for an epidural. I never thought I'd be able to give birth naturally, but I did it and I still consider it one of my biggest accomplishments. So a random doctor that happened to be in the hallway delivered Aaron. Everything was fine and we were perfectly delighted with our new little boy.

I have read a lot of stories from people whose children were diagnosed at birth and most of them talk about how all of the nurses and doctors get really quiet and start whispering in the delivery room as soon as the baby is born. It's usually pretty obvious to the medical professionals when a baby is born with Down Syndrome. But that isn't part of our story either. There were A LOT of nurses in our room when Aaron was born but that was because he came so quickly and there wasn't a doctor there until the very end. None of them seemed concerned after he was born. Nobody rushed him out of the room or whispered to each other or looked at us with concern on their faces. No one mentioned Down Syndrome until later that night (he was born around 6 in the morning).

Not long after Aaron was born we were taken up to our post-partum room at Northside Hospital. When the Pediatrician came in to see us that night he is the one that completely flipped our world upside down. It was a doctor we didn't know. Northside has Pediatricians on staff that see the babies and then send their reports to whatever Pediatrician you choose to use once your baby leaves the hospital. So it was this doctor who we had never seen before that walked into our room and told us there might be something wrong with our son. I don't remember a lot of the details of what he said. I felt like someone had shot me when he said he wanted to have Aaron tested for Down Syndrome. I am a nurse - a Pediatric Nurse at that - but I didn't know much about Down Syndrome. I knew that most kids with Down Syndrome were treated badly (by other kids) and kept away from the other students at school when I was growing up and that was enough to make me fear it for my child. So here I am on what should be one of the happiest days of my life (and had been up until that point) with a doctor telling me that my child may have a disability. I think I remember him saying something like "he doesn't have a lot of the features, but I think I want the geneticist to come see him and see what he thinks. I don't think he has it, but let's be sure." It was enough to scare us but we clung to the belief that he thought Aaron didn't have DS. The next morning (at least I think it was the next morning - everything runs together after that Pediatrician came to see us) the geneticist came in to see us. He checked Aaron thoroughly and told us a lot of information about Down Syndrome that I couldn't process at the time and gave us a packet to take home about it. He told us he was on the fence about whether or not Aaron had it and that wasn't typical for him. He had seen thousands of babies and he usually knew one way or the other. Aaron didn't have a lot of the typical features of a baby with DS and to me he just looked like a baby. MY baby.

Getting a diagnosis was as "simple" as a blood test and they said it would be prioritized since he had already been born (meaning it would be looked at ahead of those that were from amnio tests). Of course, since nothing is ever simple for us, they sent the sample to the wrong lab - it went to New York instead of Florida - and it took a week and a half to get the results instead of just a few days. Needless to say, it was the longest week and a half of my life. When we finally got the results and our worst fear was confirmed, I was upset, but not as devastated as I thought I would be. I think by the time we got the official results, we already knew what they would say. That's not to say I wasn't upset. I cried a lot for the first few months of Aaron's life. Friends and family sent congratulations and condolences. It was a very surreal feeling and range of emotions. I wanted to be happy about my new son. And I was. I never had a problem bonding with him and I fought tirelessly to get him everything he needed. Nursing him was VERY difficult, but I was determined and after about two months of trying to nurse, pumping and bottle feeding, he finally got it. Another huge accomplishment for both of us.

The emotions we felt during those first few months are difficult to describe and impossible to understand unless you have experienced it. I gave birth to a beautiful baby boy, but the diagnosis that came shortly afterwards stole from me the child that I thought I would have. We all have hopes and dreams for our children. They typically start before our kids are born. We dream of what they will do, what they will look like and the people they will become. We dream of what their interests will be, the friends they will have, the college they will go to. When Aaron was diagnosed with Down Syndrome, those dreams were shattered. Although I didn't lose my son, I lost the son I thought I would have. And although it seems crazy to anyone who hasn't gone through it, it was a very real grief, one that I probably won't ever fully recover from.

In the three and a half years since Aaron was born, I have changed. I look at the world differently, I look at people differently and I look at myself differently. Although I was utterly shattered when Aaron was diagnosed, I have come out of it thankful for many things. I am thankful that I have already accepted that my children probably won't be the people I dreamed they would be and that's okay. Whatever they do and whoever they are is okay with me, I will love them no matter what.  I am thankful that I have the opportunity to really enjoy and appreciate every accomplishment that Aaron has. They are so much sweeter when you see how hard your kids work at them. I am thankful for the love that Aaron has already spread through the world. He blows kisses and gives hugs to pretty much everyone he meets. His smile lights up any room he is in. The joy and love that radiates from him is unbelievable and unmatched in anyone I have ever met. He may learn more slowly and have to work harder to do things that you and I take for granted, but that doesn't make him less of a person or any less valuable than the rest of us. Down Syndrome is not the devastating condition that I thought it was three and a half years ago. I think if we could all slow down a little and take the time to learn something from the people in this world with DS, we would all be better off.

Pictures of the Boys

We have all been sick lately. Some horrible cold that doesn't want to go away. It gave Jacob and ear infection, Aaron pink eye and has some how made me sick again before I really got over the first bout. We have been a pretty miserable bunch for the past couple of weeks, but I did manage to take the kids outside to take some pictures at the end of last week. I figured I would see what kind of shots I could get with my fancy camera. I'm no professional photographer, but I'm pretty happy with how they turned out. Here are a few of my favorites!

Magnolia Munson

So Matt and I temporarily lost our sanity and decided to get a puppy! An English Bulldog puppy to be exact and we are all completely in love with her. She is all white (with some black spots on her ears, but all the fur is white) and just as cute as she can be. Right?!

We decided we would go ahead and name her because if we let the kids name her she would be either "Dog!" (Aaron) or "Woofy" (Jacob) or something to that effect. So Matt and I settled on Magnolia (for the beautiful flowers/trees in our home state of Georgia) and Munson (for the late, great Larry Munson - longtime Georgia Bulldog football radio announcer) and we'll call her Maggie for short because it's such a cute name!
Since she's so cute, here's another picture.

 Rather than telling the kids before we brought her home, we made it a surprise. We took her to the vet to have her checked out before introducing her to them because we didn't want any broken hearts if there was something seriously wrong with her (Matt and I have been through that with a puppy before and really didn't want our kids to experience that too). Luckily, the vet checked her out and said she looks great. Perfectly healthy and ready for her new home.

So when I brought her home, she was in a box (without the top on it - I'm not inhumane) but the kids couldn't see her. Matt told Jacob we had a new family member and he got a really confused look on his face. When I showed him what was in the box his jaw dropped and his face lit up. Aaron started doing the sign for dog (which is patting the side of your leg) and yelling "Dah!" "Dah!".

So, Friday will make one week since Maggie joined our family and so far things are going great. She isn't so sure about Jacob yet (the feeling is mutual though) and she likes to play with Aaron (again, the feeling is definitely mutual). She likes to eat, sleep and chew on things. Crazy, I know. For the most part, she uses the puppy pads and she has fit in with our family pretty seamlessly. We all love her and hope she lives a long, happy life with us.

Aaron is especially fond of her and I have been astounded at his instinctive calmness with her. As wound up as he gets, I thought he would be really rough with her. But once she was comfortable in our house and he had calmed down enough to stop yelling "Dah!" at her every time he saw her, he has been nothing but gentle. He sits down when she is out playing with him, he pets her gently, he gives her hugs (without squeezing her) and he holds his hand out so she can sniff him. It appears they already have a kinship which I hope will be good for both of them for years to come.

So, I hope you have enjoyed the pictures of our new furry family member. Welcome home, Maggie!